Day 654 – Grayson’s Journey

Dear family and friends,

Grayson woke up alert and happy this morning. He went through his morning routine with me answering my questions and smiling.

He was alert all day but seemed to lack the ability to follow through with the sequence of several daily routines. These are things we do many times a day. For example, in an effort to improve continence we take a restroom break every waking hour. This is a lot of repetition of these tasks from opening the toilet clear through washing and drying his hands. Over the course of the past year that he has been living at home with us – well, you can do the math as to how many repetitions that has been. Today he just couldn't execute all of the steps without significant cueing. During the last couple of hours before I put him to bed, he finally was able to get through most of the routine on his own.

Today was the kind of day where patience was of utmost importance. Today was the kind of day I just couldn't be in a hurry.

When my children were little I used to a particular prayer posted on my laundry room wall and it is, in fact, still one of my favorite bookmarks. I share it with all of you especially with those of you who have young children and for those of us whose children will always be young in some ways.

 

Parents Prayer by Mary L. Robbins

They are little only once LORD. Grant me the wisdom and patience to teach them to follow in your footsteps and prepare them for what is to come.

They are little only once LORD. Make me take the time to play pretend, to read or tell a story; to cuddle. Don't let me for one minute think anything is more important than the school play, the recital, the big game, fishing, or the quiet walk hand in hand. All too soon LORD they will grow away and there is no turning back. Let me have my memories with no regrets.

Please help me to be a good parent, LORD. When I must discipline, -- let me do it in love, let me be firm, but fair; let me correct and explain with patience.

They are growing away LORD. While I have the chance let me do my best for them. For the rest of our lives, please LORD, let me be their very best friend.

 

I wish you peace and patience,

Regina

Day 653 – Grayson’s Journey

Dear family and friends

Grayson was fairly alert today. He worked with Regina on speech clarity for a bit today and had some success on his understandability, but each word is a new struggle. Stringing them together in a cohesive sentence is just not in the cards today.

Grayson and Lauren watched a movie this evening as I prepared dinner – Burlesque. I couldn't help but tune in to it also – what a fun movie!

Pax!

Brant

Day 652 – Grayson’s Journey

Dear family and friends

Today was back to work and reality after a long weekend away. Regina and I were both buried with work after a short time away. Fortunately Grayson was a champ most of the day.

This evening Grayson and I prepared dinner for the girls while watching a movie that they would not appreciate – Sum of All Fears. We had a "guy" evening, in a manner of speaking!

Pax!

Brant

Day 651 – Grayson’s Journey

Dear family and friends

Today we enjoyed a wonderful morning with our friends Mike and Jill in Napa before heading on the long drive home. We had a great weekend and it was sad to leave!

Grayson was alert and awake almost all the way home. For those that knew Grayson in the pre-injury past, Grayson + car on drive = sound asleep. This is one of those changes that we are still amazed with.

We ate dinner at our favorite Italian restaurant when we hit La Cañada, so we were well fed and ready for bed when we arrived home. A fitting end to a great weekend!

Pax!

Brant

Day 650 - Grayson’s Journey

Dear family and friends

Today we enjoyed a wonderful day in Napa with our dear friends Mike and Jill. Grayson was last here at the beginning of his senior year in high school – nearly 8 years ago. A lot has changed since then.

Today we relaxed and had an easy start to our day. We went into downtown Napa for lunch then wandered about the downtown area. Grayson was a good tourist as we popped in and out of shops! We ended our afternoon gathering the major ingredients for our dinner before heading back home with our hosts for the evening.

At one point this evening Mike gave Grayson a small bowl of trail mix to fill the hole he always seems to have before dinner. He sat down outside on a couch to eat his treasures and one of the dogs patiently watched him as he slowly consumed the mix of nuts and dried berries. When he got down to the last almond and cranberry, he reached into his bowl and handed the almond to the dog. That sweet gesture tells me that Grayson still has a generous heart.

Tonight we enjoyed another wonderful meal and a celebration of Regina's belated birthday. Thanks to our hosts for such a special day!

Pax!

Brant

Day 649 – Grayson’s Journey

Dear family and friends

Today Grayson had to sit in the car for a long time – 6+ hours to be exact! We drove to Napa to visit our dear friends Mike and Jill for the weekend. This is a rescheduled birthday trip for Regina who lost out when I decided to go to the hospital instead of vacationing with her last June. While grateful that I am still here, I'd much rather be vacationing than in the hospital!

Grayson has been charming all day, though a bit low energy. This evening he perked up, but a lot of that has to do with the conversation around him. He loves to listen when interesting conversation is in the air. He laughs and listens intently, but does not try and join the conversation. I'd love it if he joined in more.

Mike and Jill have two large dogs. After dinner, they came into the dining room to join us, but not to mooch food off of the table. At one point they were complimented on their behavior and rewarded with some affection. A little later, we complimented Grayson on something and he patted himself on the head like the dogs!

Something is still going on in there!

Pax!

Brant

Day 648 – Grayson’s Journey

Dear family and friends

I'm home tonight after a 3 hour flight delay out of Phoenix. The coolest temperature I saw while there this week was 91°, so it was quite pleasant to arrive in Burbank's Bob Hope Airport to temps in the 80s. I'm glad it won't be 112° here like it was in Arizona!

Regina tells me that Grayson was just not on his game today. He had tremendous difficulty speaking and putting words together to communicate. In the short time this evening that I worked with him he had difficulty focusing and was quite quiet.

Tomorrow we head to Napa for a rescheduled weekend with friends. We are all looking forward to getting away to play for a few days!

Pax!

Brant

Day 647 – Grayson’s Journey

Dear family and friends,

Grayson woke up a little brighter today and that is always a joy.

We worked particularly on muscle strength today, focusing on various muscle groups using resistance. Later this evening he was sitting in a chair and some lively music came on. I asked him offhandedly if he wanted to dance with me. He jumped up and put up his hands to dance.

On these brighter days he is more responsive but with that comes a little more agitation in the evenings. His hands were shaky at dinner and he clenched his teeth while we were brushing tonight.

Wish we had a way to see what was going on in him – instead we are learning to read the clues.

We should all be so perceptive of our life's partners.

Grace and peace,

Regina

Day 646 – Grayson’s Journey

Dear family and friends,

Brant and I are planning a drive up to Napa to visit long-time friends this weekend. This is a trip we postponed three months ago when Brant's hospitalization surprised us. We haven't talked much about it in front of Grayson because we were uncertain if we were going to go alone or take him with us. It is now clear that he is going with us.

We thought we hadn't spoken of the trip in front of Grayson – obviously we had. This past Sunday we asked Grayson if he knew where we were going this weekend. He said the name of our friends. It really surprised both Brant and me. Not only had he overheard us but HE REMEMBERED. Every day this week I have asked him the same question, "Where are we going this weekend?" Each time he correctly says their names. This is amazing memory improvement. It is certainly not that we speak of these friends every day and we have not we seen them in years.

Just when I am tempted to believe that his memory is not going to improve something such as this happens. Hope has a way of sneaking in – thank God.

May each of you be filled with peace and hope this day.

Regina

Day 645 – Grayson’s Journey

Dear family and friends,

Getting Grayson to speak today was extremely difficult. Even yes/no questions or choices of A or B were a challenge for him. Yet surprisingly, on two occasions he answered me with a simple, three-word sentence.

What challenges and opportunities will tomorrow bring?

Goodnight, all.

Peace and God's grace,

Regina

Day 644 – Grayson’s Journey

Dear family and friends

Grayson was alert and engaged today. Food was, as always, one of his major delights during the day. I think that the three month period that he was unable to eat solid food had an effect on Grayson that lasts today, even though he has no recall of the time. I don't know how good his system of taste and smell is, but it appears to be better than when he was first tested at CNS in late January of 2010. I hope that he enjoys it as much as it appears!

Grayson and I went on a walk today – the one mile round trip up the hill and back. He was a little faster than normal, but not much. I still looped back many times during our walk, but he kept moving forward. In the end isn't that the most important thing – to keep moving forward?

We finished the evening with a movie and bed. To our delight he stayed in bed this evening, unlike last night when he kept getting up until after midnight!

Thanks be to God!

Pax!

Brant

Day 643 – Grayson’s Journey

Dear family and friends

It's Saturday! Some sleep-in time and time to work on stuff around the house!

That was today for us. We got up late then did some chores and some "home improvement" – fixing a broken Ethernet jack, buying new plugs and switches for Lauren's remodeled bedroom, a trip to the hardware store – you get the idea. Grayson was my faithful companion the entire time.

During a break in the work, we were all gathered in Grayson's room. Grayson and I were relaxing on the couch and Regina pointed to the series of posters on the wall in his room. The posters are of the eight Spring Musicals at Flintridge Prep that our boys participated in – Grayson from 1999 to 2004, and Austin from 2001 to 2006. Regina asked Grayson the name of each the musicals and he gave them to her. When he came to My Fair Lady she asked him to sing a song that he did from that musical. He couldn't remember. She hummed a bit of the tune from Get Me to the Church on Time and he joined with the words. Parts of those memories are still there!

For fun, here is Get Me to the Church on Time with Grayson as Alfred P. Doolittle in Flintridge Preparatory School's 2003 production of My Fair Lady. Enjoy again!

Pax!

Brant

Day 642 – Grayson’s Journey

Dear family and fiends

Grayson was a bit "off" all day today. He was not out-of-sorts, but he was a little "fuzzy" – having difficulty focusing, sitting, or waiting for lunch/dinner/anything edible.

After dinner tonight, Grayson and I watched a movie. Tonight was a relaxed summer evening for the Reed Haus!

Pax!

Brant

Day 641 – Grayson’s Journey

Dear family and friends

Regina tells me that Grayson was on his game again today. This evening when we were running some errands, he was alert and active. When we returned home, I started dinner.

We had a late dinner while watching a movie. When the movie was over it was time for bed!

Pax!

Brant

Day 640 – Grayson’s Journey

Dear family and friends

Grayson was on his game today! He was way more alert than he has been for a few days and he was able to complete certain daily living tasks on his own today. The most notable of these was a visit to the restroom that he was able to complete start to finish on his own with no help or prompting. This happens occasionally, but not very often. We celebrate these little victories and hope that he remembers next time.

According to Regina, Grayson was also speaking quite a bit today with prompting and encouragement. Singing songs was also one of the therapies for today.

All in all today was a very good day!

Pax!

Brant

Day 639 – Grayson’s Journey

Dear family and friends

Regina tells me that they worked on speaking and singing today. She complimented him on his (prompted) pronunciation and that he tried and did his best. What more could one ask of a Scout?

After I arrived home Grayson and I went for a walk. Our usual mile took extra long today – mostly because I don't think that there was any way possible that he could walk any slower and remain awake. I probably walked a mile and a half looping back to encourage him to move along!

Just as we were approaching the house from our walk, our neighbor's daughter Annabella, was walking toward us. She stopped and we had a delightful chat. Since we moved into the neighborhood (Grayson was almost 2), she has gone from high school to college to grad school and is now married and living on the east coast. She had a short visit home this week but it was great to see her again.

We are blessed by the people that surround us!

Pax!

Brant

Day 638 – Grayson’s Journey

Dear family and friends

Grayson was a little off of his game and a bit "wobbly" all day long. When he is a bit unfocused and wobbly, he scares the dickens out of us on the stairs – and our home has plenty. Fortunately, he remained vertical all day long and followed our normal and oft repeated instructions to hold the handrails as insurance.

This evening he helped me prepare dinner and watched a movie. Nothing out of the ordinary or unusual this evening – just a normal day at the Reed Haus!

Pax!

Brant

Day 637 – Grayson’s Journey

Dear family and friends

This morning we were off to church in a hurry – Regina was on AV duty. Grayson and I were without adult supervision in church this morning. After church I did some computer chores around church while Regina ran to her office. We met for lunch about 90 minutes after church having completed the most pressing of our chores. Grayson was a champ with me as I went about some preventative computer maintenance.

After lunch Grayson and I did the grocery shopping for the week and suddenly it was dinner time! Where did the day go? We made dinner, cleaned up then it was off to bed to begin our week anew.

Blessings to all of you as you begin your week refreshed and renewed!

Pax!

Brant

Day 636 – Grayson’s Journey

Dear family and friends

Tonight we had company over for dinner for the first time in months. Because of the remodeling efforts in Lauren's room and the laundry room, there hasn't been an inch to walk in the dining room until last week. Finally the ability to entertain again!

Rita and Richard (Regina's sister and her husband) were the first victims of our entertainment. Grayson was a willing companion as we ran around to gather all of the things that we needed for the evening. He enjoyed listening to Rita's stories and laughed frequently as she told them. He was engaged, if not a participant in, the conversation!

Pax!

Brant

Day 635 – Grayson’s Journey

Dear family and friends

I arrived home this evening after a week in St Louis to big hugs from Grayson, Regina and Lauren. I was extremely fortunate that the weather in St Louis was unusually beautiful – not too hot and not humid – but it is great to be back home.

Today Lauren watched Grayson as Regina went to a special event with the girls in the family – a luncheon for Grammy to honor her 101^st birthday. All had a great time and Regina tells me that it was wonderful to once again celebrate the many accomplishments of this special lady. Special thanks to Lauren for allowing Regna to go by taking care of Grayson for the afternoon.

Here is a rerun of the picture I posted last year on the occasion of Grammy's 100^th birthday – our kids and all of the other cousins with Grammy in 2006.

Pax!

Brant

Day 634 – Grayson’s Journey

Dear family and friends,


Three times this evening Grayson stood up and started wandering. I asked where he was going or what he needed and he said "dinner". This was all within one hour of finishing dinner together.

Three times within an hour of Grayson going to bed tonight, he crossed the threshold of his room and set off his door alarm. Once when I asked where he was going he said "I don't know". I think that is absolutely correct. Like a small child he doesn't know what to do to shut down. It is hard for him to wind down some nights and he can't identify what is stirring him inside.

Three times seems to be the charm tonight – it has been over half an hour and no alarm. Now, perhaps to sleep.

Psalm 3:5

"I lie down and sleep;
   I wake again, because the LORD sustains me."

Peace and restful sleep to you this night,

Regina

Day 633 – Grayson’s Journey

Dear family and friends,

Today I gained additional respect for full-time caregivers.

Let me say first that Grayson is a love to be with. I say that because I know many people who care for individuals that are unable to be affectionate or appreciative. This is not one of our challenges. That being said, the demands are constant from first thing in the morning until well into the evening (he is still awake in bed as I write). From showering, shaving, meal preparation, exercising, cognitive exercises, practical and social skills practice, extra laundry and floor cleaning to hourly restroom routines it is a full schedule. Balance that with working from home, going to the office late in the evening and on weekends and you get the picture. Oh, and the fact that Brant is travelling about two weeks a month again.

Please don't think that I am complaining. I am grateful that God is allowing us more time to love and care for Grayson.

My new level of respect for caregivers comes from an appreciation of how difficult it is to do all of this when you are ill or hurting yourself. The last two days, I have been struggling with a rib injury and find it difficult to bend, carry, twist, sit, lie, or breathe deeply without some level of pain. Debilitating – no, just frustrating and not very conducive to practicing patience.

I salute all of the caregivers of the world. Take care of yourselves.

Peace and rest to you this evening,

Regina

Day 632 – Grayson’s Journey

Dear family and friends,

Every day brings more questions about Grayson's brain injury and there is so much to learn.

As we have mentioned many times, Grayson is quite non-verbal. We make it a part of every day to encourage him to speak slowly and clearly. There are at least two major goals I keep in mind. One is to have him speak so that people who don't know him can understand him. We can understand him more easily because we know him so well. The other goal is for him to have a way to express his desires, frustrations, and opinions.

A few words at a time are the maximum we get and that is not usually spontaneous.

Before I went to bed last night, I checked in on him. He had been asleep an hour or so. As I was standing in his doorway he started speaking. Long streams of animated words in a good strong voice. I couldn't understand the words but what a joy it was to hear his resonant tones expressing some train of thought! I was overwhelmed.

Will we ever be able to unlock his waking ability to express himself? We will keep on trying.

Peace,

Regina

Day 631 – Grayson’s Journey

Dear family and friends,

Yesterday Brant talked about an increase in Grayson's ability to navigate his computer. Today Grayson again showed interest and ability in launching broadcast video on his computer - particularly his old passion anime. His motor control is somewhat steadier and he is driving the mouse much more successfully. Still a lot of extra "clicking" going on.

Along with this renewed interest and initiation is the return of his jumping up in the middle of an otherwise pleasing situation. Examples are while eating, reading or watch TV. Suddenly he just springs to his feet, occasionally knocking over his chair and nearly himself. Also returned is his agitation while we brush his teeth and impatience when we encourage him to finish washing his hands.

I suspect these may all be side effects of our weaning him off a particular drug he has been on for nearly two years (even though now on a very low dose). As with nearly every change, there are positive and challenging aspects. As we remove the potential muting effect of the drug, allowing him a sharper awareness, he (and we) must deal with a reduced complacency. No child will learn if he only does what he is told – even if it is harder. I expect to see more aggressive and passive resistance as we stretch his attention and encourage endurance. I also see it as an opportunity to encourage him to express his approval or disapproval.

This is harder but it is, after all, progress.

Peace to you all this night.

Regina

Day 630 – Grayson’s Journey

Dear family and friends

Last night as I was getting ready to go to bed long after I put Grayson down, I opened his door as I do every night. To my surprise he was standing in front of his computer watching a news broadcast!

Going back in time to Saturday morning, I hooked up some speakers to Grayson's computer. We listened to some music for a test and then played a CD for fun. After that we were done with it and went on with our day.

Last night he had enough motor control to navigate to and launch a video broadcast. I was amazed and impressed. Some of the old skills and muscle memory are still with him!

Pax!

Brant

Day 629 – Grayson’s Journey

Dear family and friends

It's Saturday! A sleep-in day, then some work around the house. We accomplished some things today that we are all feeling good about! We concluded the day with a steak dinner (a now-rare treat of beef in this house of cardiac kids) and the 7^th Harry Potter movie – Harry Potter and the Deathly Hallows Part 1.

Grayson was along with us the entire day. He was alert and engaged today – and also ready for bed after a full day of running errands and helping us move things around the house!

Therapeutic opportunities present themselves most any time. The key is to recognize them!

Pax!

Brant

Day 628 – Grayson’s Journey

Dear family and friends

Regina and Grayson went out to breakfast this morning! Actually it was more like lunch as he slept in a bit today.

Grayson was a bit unfocused today. We think that he is adjusting to the lifting of the fog created by the neuro med we are reducing. He is learning to deal with a bit more neural noise than he was a few weeks ago.

I'll take the change!

Pax!

Brant

Day 627 – Grayson’s Journey

Dear family and friends

Do you ever have one of those days where you can barely remember what happened because you were so busy? That was mine today, and I think that Regina would say the same thing. It is days like these that I worry, as only a parent can worry, if we paid enough attention to Grayson. I know that Regina spent some quality time with him, and I took him on an errand with me, but I know we could have done better. Life just got in the way today.

We do the best we can with the time that we have.

Pax!

Brant

Day 626 – Grayson’s Journey

Dear family and friends

Grayson woke up this morning stuck in compound low – he was just in slow motion for most of the morning. Later in the afternoon he became more alert. By the late afternoon he was speaking again and alert enough to focus and accomplish some tasks. By dinner he was operating at full force – Grayson Style.

Isn't it funny how each day can be so different? And that a single day can have elements of good days and bad days? Living with brain injury – always an adventure!

Pax!

Brant

Day 625 – Grayson’s Journey

Dear family and friends

It is my observation that Grayson has been a little calmer and a bit more alert as we have weaned him off of the neuro med that he has had since his initial hospitalization 600+ days back. The differences are subtle and unless you spent a lot of time with Grayson, you probably wouldn't notice. On Thursday we further drop the levels and we'll see what happens!

Grayson worked with Regina on speech this evening. He has become so non-verbal that he points as a primary communication tool. Regina refuses to accept his pointing and makes him say what he wants (sometimes giving him the first words like, "May I"). With Regina there is usually a pause at the end until he adds, "Please!" Grayson had lots of time to practice today!

Therapy in everyday living!

Pax!

Brant

Day 624 – Grayson’s Journey

Dear family and friends

Monday – back to work for Regina and I and a busy week on the horizon. Actually it is so busy for Regina that she spent most of the weekend at the office!

Life with a disabled young adult at your home is a continuous challenge – emotionally and practically. Grayson is a sweet and loving person that will gladly just sit and read a comic book or watch TV. The emotional challenge is that those are not strategies to help him to overcome his injury – they are not therapeutic. So the practical challenge is to take the time away from all of those other things that you need to do and spend time doing therapeutic activity.

Some therapeutic activity can be incorporated into everyday things. Tonight I asked Grayson to get me the extra virgin olive oil while I was preparing dinner. He handed me the canola oil, the peanut oil and the balsamic before finding the correct item. I asked him what each item was when he passed it to me. He realized that it was not the correct thing when he read the label out loud, then he went back for another bottle. It sure would have been faster and easier to just grab the darned thing myself, but I would have lost an opportunity.

And opportunity for therapy in whatever form it presents itself is a blessing that needs to be recognized and seized.

Pax!

Brant